Rsdsa community update

rsdsa

community update

VOLUME NO. 4

ISSUE NO. 4

WWW.NEWSLETTER

Spring 2018

INSIDE THIS ISSUE

Four young women at rock: Kappa-Phi sponsored sign-a-thon at Ohio Northern University Jim Broatch welcoming participants at December seminar in Greenwich Two photos: 2018 Crazy Sock Walk for Invisble Disease Campaign in Florida (group under canopy and crazy socks)

EMERGENCY OUTREACH WITH BILLY ALEXANDER, MD (page 12)

INSIDE THIS ISSUE

Page The Director's Letter - A Spring Update............................... 3

Fluoroquinolones and CRPS.................................................... 5 Lana Santoro: Teacher Turned Student.............................. 7

The Importance of A Walk......................................................10 Emergency Outreach: Dr. Billy Alexander.........................12

RSDSA Launches Support Group Facilitator Support Group........................................................13 Edamame Salad.............................................................................14

RSDSA Young Adult Weekend.................................................15

Find Us Online

Blog blog/

Twitter @rsdsa Facebook rsdsa YouTube user/ RSDSAofAmerica Instagram @rsdsa_official

Editor Lauren Bentley laurenbentley93@

CALL FOR AUTHORS & IDEAS

Do you have a personal story, art, or knowledge to share with the CRPS community? Did one of these articles resonate with you? Is there a special topic you would like to see included in the RSDSA Community Update? We would love to hear from you. Please email your thoughts to info@.

SPECIAL THANKS

We would like to acknowledge our Corporate Partners whose generosity has helped to underwrite this issue of the RSDSA Community Update. Our Corporate Partners include Abbott, Aetna, Axsome Therapeutics, Grunenthal, Ketamine Treatment Centers Partnership, McLarty/Pope, Neurologic Relief Center, , Oska and Relax Release Relief. For more information about becoming an RSDSA Partner, please contact Jim Broatch at info@.

The Director's Letter - A Spring Update

BY JIM BROATCH, RSDSA'S EXECUTIVE VICE PRESIDENT, DIRECTOR

TREATING THE WHOLE PERSON: OPTIMIZING WELLNESS CONFERENCE IN SAN JOSE ON MARCH 24

RSDSA is returning to the West Coast. We are partnering with the Bay Area Pain and Wellness Center to sponsor an exciting full-day conference: Our faculty are experts at the forefront of the latest research and state-of-theart treatments. They will discuss a variety of topics including: brain neuroplasticity and brain-based treatment modalities, navigating the health system, medical cannabis, complementary therapies, interdisciplinary treatments, incorporating psychological care into treatment, and movement-based therapies. We will also share information and support for caregivers, who are an important part of care. Here is a link to view our agenda and to register: We're also planning half-day seminars later in the year in Charlotte, NC. To view previous conferences lectures, please visit . results?search_ query=rsdsaofamerica

2018 CALENDAR OF EVENTS

RSDSA has compiled a yearlong calendar of events on our

website: . If you are interested in organizing a fundraising or awareness event in your community, please email info@ or call me at 877662-7737.

OUR PATIENT ASSISTANCE FUND IN HONOR OF BRAD JENKINS

In 2012, The RSDSA Board of Directors, in conjunction with Andrea Jenkins, established a Patient Assistance Fund in honor of her son, Brad, who passed away from an accidental overdose. Over the last six years, RSDSA has awarded grants totaling over $81,000 dollars. This fund has been able to prevent individuals from becoming homeless, pay for overdue utility bills to forestall shutoffs, enable individuals to

travel for consultations with outof-state CRPS specialists, provide wheelchairs and durable medical equipment, pay for compounded prescriptions not covered by insurance, and much more. Each grant application is reviewed by a five-person committee consisting of a nurse with CRPS patient, a physician, Andrea Jenkins, and two RSDSA Board members with CRPS. One hundred percent of the proceeds donated to the Jenkins fund are passed along to our recipients. To help RSDSA make a difference, please donate at donate/ or by calling 877-6627737. To obtain an application for assistance, please visit or call us at 877662-7737.

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BLOGGERS NEEDED! RSDSA recently compiled a listing of its top ten most-read blogs on its website.

1. CRPS & GI Frustrations From a Nurse's Perspective by Beth Seickel 2. The Club No One Wants- The CRPS Club by Jamynne Bowles 3. The Top 10 Shoe Brands for CRPS from a CRPS Perspective by Ashley Epping 4. Magic Wand- Experiences Living with CRPS by Alessia Zen 5. New Year, New RSDSA Goals- Helping the CRPS Community by Samantha Barrett (Anderson) 6. From One Family to Another- A Pediatric CRPS Journey by Bobby and Lauren Gellert 7. Fear of Distance- RSD/CRPS and the Journey Away from Home by Rachel Ehrenberg 8. Just Wanted You to Know: CRPS PRISMA Trail by Jim and Sammie 9. Palliative Care for the Person with Complex Pain Generating Syndromes by Dr. Terri A. Lewis 10. The Importance of People- Friends with CRPS by Samantha Barrett (Anderson)

MEDICAL EQUIPMENT EXCHANGE PROGRAM

RSDSA is creating a program that will facilitate the donation of durable medical equipment such as wheel chairs, shower aids, hospital beds, walkers, etc. We will list the equipment available and where each piece

is located. Although we cannot pay for shipping, we will connect the donor and the individual interested in obtaining the equipment.

We continue to post every Tuesday for "The Tuesday Burn." If you would like to

write something from your perspective, please contact Samantha by calling 877-6627737 or by emailing sanderson@

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turn hurt into help. donate today. call 877.662.7737

Fluoroquinolones and CRPS

BY BILLY ALEXANDER, MD

Disclaimer - The opinions expressed in this article are the personal opinions of Billy Alexander, MD, and do not reflect the official position of the RSDSA. This advice is not meant to replace the advice of a patients' personal provider, but rather serves as an educational tool.

Recently several inquiries have been submitted to the RSDSA concerning adverse effects of fluoroquinolones in patients with CRPS. To adequately address the issue and question of the adverse effects of fluoroquinolones in patients with CRPS, we will first briefly look at the history of this class of antibiotics.

The class of antibiotics known as quinolones are all derived from a parent compound named nalidixic acid, which was marketed for the treatment of urinary tract infections in 1962. This class of antibiotics was discovered as a byproduct of the synthesis of chloroquine, an antimalarial antibiotic still used today. Since 1962, several newer versions of quinolones have been developed, with the most recent ones including a fluoride atom in the structure: hence the tweaking of the class name to fluoroquinolones. In America, the two most commonly used fluoroquinolones are ciprofloxacin (Cipro) and levofloxacin (Levaquin).

"The vast majority of medicines and pharmaceuticals are foreign to our bodies and immune system. Therefore, it shouldn't surprise us that (thankfully) only an exceptionally small percentage of patients will have adverse reactions to these

medicines."

The vast majority of medicines and pharmaceuticals are foreign to our bodies and immune system. Therefore, it shouldn't surprise us that (thankfully) only an exceptionally small percentage of patients will have adverse reactions to these medicines. Fluoroquinolones are no exception: they are foreign materials and chemicals to the body and its immune system that can also cause adverse reactions in a small percentage of patients.

Now, let's turn to the relationship between fluoroquinolones and CRPS. As we investigate how this issue relates to our community, we will focus specifically on neurotoxicity issues and forego other types of reactions involving other bodily systems

or organs. Before we examine the fluoroquinolone class of antibiotics, it is important to note that neurotoxicities of different types occur with many different classes of antibiotics. In an excellent, although quite technical, article, Grill and Maganti thoroughly catalogue the adverse neurological effects of many different antibiotic classes: 1 the penicillin class can rarely cause seizures, encephalopathy, and confusion; aminoglycosides can rarely cause neuropathy and encephalopathy; cephalosporins can rarely cause confusion, seizures, or encephalopathy; and sulfa drugs can rarely cause encephalopathy and psychosis. The list could go on into several other classes of antibiotics that can rarely cause neurotoxicity, but the point is already made clear in this brief list: virtually all classes of antibiotics have a very low possibility of causing neurological reactions and disorders. Fluoroquinolones are not the exception.

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